Friday, June 29, 2012
Three months
It's been over three months since Lucy went home and I can honestly say that I am feeling much better. I thank God for the people who have helped us through this. It really has been a time of testing and I know I haven't passed all of the tests with flying colors, but I feel like the fact that I am able to make it through the day without crying is great! I know that Lucy is with God and that is the best place she could be. We appreciate your continued prayers as we try to live lives that will allow us to be with Lucy again someday in Heaven.
Saturday, April 14, 2012
Saying Goodbye
I know that as soon as Lucy's heart stopped and she stopped breathing that God took her home, but there is a part of me that was horrified thinking of her little body laying in a cold, dark place somewhere in a funeral home waiting on paperwork, of all things, to be dealt with. Last week we finally got all the paperwork together and they cremated her remains. I picked them up yesterday. It was horrible. I almost couldn't go in, but I did. Now the little box is sitting on top of our new to us piano (thanks to my aunt Suzy!), and I really have no idea what to do with them. I wish I would have spent more time with her before we gave her back. My husband wanted to give her back before she had even passed and I refused, but I didn't want to hurt him any more than he was already hurting, so I spent 5 little minutes with just the two of us and prayed over her and then everyone came in and I let them take her. I also think maybe we did the wrong thing in having the c-section. I could have insisted on monitoring or I could have just waited for her to pass in utero. Maybe that would have been the best thing for her. I really don't know. I suppose this is the hard part they were talking about.
I know things will be ok eventually, but I guess I'm just hurting worse than I thought I would. Please keep praying for us. Thank you to everyone who has sent us cards, sent emails, brought food, and reached out to us. We see God in you and it is keeping us sane. I thank God for my mother who insisted on coming and surprised us both by her physical and emotional strength. I sent her home today and I think that's why it's been such a rough day. I didn't think I needed my Mama anymore, but I have needed her and I really appreciate her spending the time and money and energy to come out here and love us and cook and clean and play with Isaac. I also thank my cousin, Sarah, for checking on us so often and helping with Isaac, and my aunt Marilyn who came the first two days and wore Isaac out entertaining him so well. All of this love has made me realize how lazy I have always been about helping those around me who are hurting. I plan on doing a better job from now on, because the help we've received has meant so much to us.
I know things will be ok eventually, but I guess I'm just hurting worse than I thought I would. Please keep praying for us. Thank you to everyone who has sent us cards, sent emails, brought food, and reached out to us. We see God in you and it is keeping us sane. I thank God for my mother who insisted on coming and surprised us both by her physical and emotional strength. I sent her home today and I think that's why it's been such a rough day. I didn't think I needed my Mama anymore, but I have needed her and I really appreciate her spending the time and money and energy to come out here and love us and cook and clean and play with Isaac. I also thank my cousin, Sarah, for checking on us so often and helping with Isaac, and my aunt Marilyn who came the first two days and wore Isaac out entertaining him so well. All of this love has made me realize how lazy I have always been about helping those around me who are hurting. I plan on doing a better job from now on, because the help we've received has meant so much to us.
Tuesday, March 27, 2012
Lucy's Heaven Day
Lucia America "Lucy" was born yesterday via repeat c-section at 2:10. She weighed 1 lb 1 oz and was 11 inches long. She was examined, cleaned up, wrapped up, and passed to my husband. On the outside, she was perfect except for a tiny skin tag in the middle of her little chest. She was so tiny and so skinny still, but she was absolutely beautiful to me. It's amazing to me that human beings can be such tiny, but well formed creatures. She had tiny hands and feet and even fingernails and toenails. She had a little bit of dark hair, but she had blondish red eyebrows and very blonde eyelashes. Her eyes were big, just like Isaac's and she had her big toe and second toe spread apart on one foot like he liked to do when he was a newborn. Her little ears were just perfect, every little crease and detail so exact. After they sewed me up, the took me back to the room with Lucy in my arms. We got to spend just a little over an hour with her before she went home to be with God. We had a chance to take some pictures, and a very nice lady named Sharon from Now I Lay Me Down to Sleep was there in the OR and the room to take pictures for us. We dressed her up in one of the beautiful outfits from www.jaquispreemiepride.com. I highly recommend this website for anyone who has a preemie or micropreemie. The clothes came super fast and they were just absolutely beautiful and handmade. She spent her last moments with her precious little head resting on my chest, exactly where I wanted her to be. It was the most beautiful and saddest moment of my life, but I will always treasure the chance I had to spend with my little girl. I feel peace that we made the correct decision in deciding on comfort care. I was terrified that she would be stressed or in distress, but she was quite peaceful. The best part is knowing for sure that she is with God now, free from any pain, suffering, illness, worries, heartache, guilt, sin, and separation from God. My selfish side wishes she were still here with me in my arms, but my heart and soul know that she couldn't be in a better place right now.
My husband and I would like to thank everyone who has sent us cards, emails, text messages, comments, facebook messages, flowers, candy, food, and more than anything love and prayers to heaven for us. I woke up early this morning thinking about what a strange and amazing experience this has been. We have truly seen God working through other people to show His love to us. We have seen Him answer prayers asking for wisdom about what to do with Lucy after birth. Despite something that could possibly be the saddest thing I will ever have to experience in this life, I have been filled with amazing joy at the same time by the outpouring of love we have been shown and by all that Lucy has taught us about God and others and ourselves.
Some verses came to mind this morning that I think I never truly understood until now.
Here are a few:
Romans 15:13
May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit.
Oh, and He has filled us with joy and peace in this difficult time!
Philippians 4:7
And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.
God is guarding our hearts and minds from depression, desperation, and darkness.
2 Corinthians 12:9
But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me.
One thing about being in the hospital and being helpless (i.e. legs are totally numb) is that you have to just trust that others will take care of you and give up any sense of guilt or fear that you will be embarrassed by your weakness. Once you just let other take over for a while, it is such a relief to rest and be taken care of when you are not able to do it for yourself. I think that God wants us to be like this ALL of the time with Him, but it is so easy to think we are self-sufficient when things are going well. Therefore, when we are weak with sadness, grief, loss, and helplessness, God can finally take over and show us how great is His power and love for us. I pray that I don't forget this feeling of how wonderful it us to be carried, or that I also need to carry those around me in times of need. And, I thank all of you who are helping to carry our burdens at this time. You are God's hands and feet and arms!
I am so grateful, once again, for all the help we have received, for the kind staff here at the hospital, for our family and friends, and especially our spiritual family. I am grateful for new friends who live far away and have been praying and hoping along with us. I am grateful for my sweet husband who has been very strong for both of us throughout this whole ordeal and has been a rock for our family. I am grateful for my little boy, who reminds me to thank God every day for the blessings I already have and who reminds me to laugh and look at the world with wonder and amazement.
I don't know if I will be posting on the blog anymore, but if I think of something I really need to share, I will.
God bless you all and keep walking with Him. He is the only light and hope in this world, and the only One who can keep us from destruction and spiritual death.
Love,
Becky
My husband and I would like to thank everyone who has sent us cards, emails, text messages, comments, facebook messages, flowers, candy, food, and more than anything love and prayers to heaven for us. I woke up early this morning thinking about what a strange and amazing experience this has been. We have truly seen God working through other people to show His love to us. We have seen Him answer prayers asking for wisdom about what to do with Lucy after birth. Despite something that could possibly be the saddest thing I will ever have to experience in this life, I have been filled with amazing joy at the same time by the outpouring of love we have been shown and by all that Lucy has taught us about God and others and ourselves.
Some verses came to mind this morning that I think I never truly understood until now.
Here are a few:
Romans 15:13
May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit.
Oh, and He has filled us with joy and peace in this difficult time!
Philippians 4:7
And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.
God is guarding our hearts and minds from depression, desperation, and darkness.
2 Corinthians 12:9
But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me.
One thing about being in the hospital and being helpless (i.e. legs are totally numb) is that you have to just trust that others will take care of you and give up any sense of guilt or fear that you will be embarrassed by your weakness. Once you just let other take over for a while, it is such a relief to rest and be taken care of when you are not able to do it for yourself. I think that God wants us to be like this ALL of the time with Him, but it is so easy to think we are self-sufficient when things are going well. Therefore, when we are weak with sadness, grief, loss, and helplessness, God can finally take over and show us how great is His power and love for us. I pray that I don't forget this feeling of how wonderful it us to be carried, or that I also need to carry those around me in times of need. And, I thank all of you who are helping to carry our burdens at this time. You are God's hands and feet and arms!
I am so grateful, once again, for all the help we have received, for the kind staff here at the hospital, for our family and friends, and especially our spiritual family. I am grateful for new friends who live far away and have been praying and hoping along with us. I am grateful for my sweet husband who has been very strong for both of us throughout this whole ordeal and has been a rock for our family. I am grateful for my little boy, who reminds me to thank God every day for the blessings I already have and who reminds me to laugh and look at the world with wonder and amazement.
I don't know if I will be posting on the blog anymore, but if I think of something I really need to share, I will.
God bless you all and keep walking with Him. He is the only light and hope in this world, and the only One who can keep us from destruction and spiritual death.
Love,
Becky
Sunday, March 25, 2012
Last night with Lucy
Tonight is my last night with Lucy in my belly. I feel sad, but I also feel happy for her. I know that she will soon be in the arms of the only other being who can possibly love her more than we do, and I know that He actually has the power to keep her safe and at peace forever. We are sad that we will not be able to enjoy getting to see her grow up, but I know that she will also never have to experience heartache, illness, fear, guilt, or sin. She will never be separated from her God. It's probably the best I could wish for any person. And yet, it just hurts so much. I know that it will and that's normal. And I know that there are so many people praying for us that we are covered in love and support. We really appreciate that. We know that God will heal our hurt in time and that there is no telling what good will come from this, in addition to the fact that there will be one more little soul in heaven tomorrow.
I will try to write tomorrow or Tuesday about how things are going.
Please pray that Lucy's time with us will be peaceful. That's really the only thing that I'm scared of --that she will be in distress or pain. Thank you all for your love and prayers!
I will try to write tomorrow or Tuesday about how things are going.
Please pray that Lucy's time with us will be peaceful. That's really the only thing that I'm scared of --that she will be in distress or pain. Thank you all for your love and prayers!
Thursday, March 22, 2012
Delivering on Monday
The sonogram today showed that the resistance in the umbilical cord was worse, despite a round of steroids yesterday. The doctor wanted to admit me today for monitoring, but I asked to wait until Monday to put things in order at work and home.
So, the plan is I will be delivering on Monday afternoon at Medical City via c-section. He said I could labor if I wanted, but the added stress on the placenta could likely cause stillbirth, so we're opting for a c-section to possibly be able to spend at least a few minutes with her before she goes home to be with God. We have decided not to intervene since she will only be about a 1 pound and no where near big enough to be eligible for surgery. My husband and I feel like the kindest thing we can do is let her go as peacefully as possible without a bunch of tubes and wires that really won't be able to help anyway. We would appreciate no visitors for our first day so we can spend time saying goodbye and mourning as a family. We are planning on cremating her and not having any sort of memorial or funeral service since she will not be spending much time on earth.
Thank you all for your thoughts, prayers, advice, cards, everything that you have done for us. We have definitely felt the love of God through all of your kindness.
We will be taking pictures and will have a photographer on hand to help us make some memories that we will share later with everyone. Thank you for understanding.
So, the plan is I will be delivering on Monday afternoon at Medical City via c-section. He said I could labor if I wanted, but the added stress on the placenta could likely cause stillbirth, so we're opting for a c-section to possibly be able to spend at least a few minutes with her before she goes home to be with God. We have decided not to intervene since she will only be about a 1 pound and no where near big enough to be eligible for surgery. My husband and I feel like the kindest thing we can do is let her go as peacefully as possible without a bunch of tubes and wires that really won't be able to help anyway. We would appreciate no visitors for our first day so we can spend time saying goodbye and mourning as a family. We are planning on cremating her and not having any sort of memorial or funeral service since she will not be spending much time on earth.
Thank you all for your thoughts, prayers, advice, cards, everything that you have done for us. We have definitely felt the love of God through all of your kindness.
We will be taking pictures and will have a photographer on hand to help us make some memories that we will share later with everyone. Thank you for understanding.
Tuesday, March 20, 2012
Mayflies in February and Junebugs in April
Well, everything seems to be coming early this year. The mayflies came around in February, and the pear trees bloomed, too. And it seems my little Junebug will most likely be born in April. The perinatologist told me today that he's seeing high resistance in the umbilical cord and some blood flowing backwards, which means that labor could be as early as 2-3 weeks away. He prescribed me a round of steroids to take tomorrow to mature her lungs and other organs and/or help decrease the pressure in the umbilical cord. Since she only weighs just over a pound, and is only gaining an eighth of a pound a week, this means that she will likely weigh less than a pound and a half a birth. This most likely excludes the possibility of being a candidate for the hernia repair or heart surgery.
After that appointment I met a wonderful lady, Karen, who showed me around the NICU, labor and delivery, and walked me to my cardiologist appointment. It's so nice to have kind people working with you in a time like this.
The new cardiologist, Dr. Laird, was very nice also. He himself spent at least 30 minutes taking images of Lucy's heart after the 20 minutes with the tech, and he talked to me for another 20 minutes or so afterward. He was very thorough and very kind. On the way out of the office I noticed they had a picture on the wall with Isaiah 40:31 and I felt like I had found the right place to be.
After the cardiologist, I saw a geneticist, who was not hopeful at all for Lucy, but she did reassure me that there was very little chance we would ever have a baby with chromosomal abnormalities again if we choose to try again.
I have to go back to Dallas on Thursday (and I have a glucose tolerance test tomorrow, which seems really silly at this point, but I suppose I should go). They will do another ultrasound there and I'll meet my new high risk OB, Dr. Farley. I'm hoping they will say that things don't look as serious as they did today, but no matter what, I know it will be ok.
It's really easy to say that I believe that everything belongs to God, but when it comes right down to it, I realize I haven't really believed it. I have believed that everything is mine, especially my children, but the truth is that none of it is mine. I don't deserve anything. Everything I have is a gift. I have said it many times, but now I need to believe it. The slogan for the Susan G. Komen 3 day walk really irks me: "Because everyone deserves a lifetime." Says who? No one deserves anything. We're given so much that we, that I, forget all the time that God has richly blessed me with too many things to count, especially considering how faithless I have been for periods of time in my life. I'm reminded of what God told the Israelites in Deuteronomy 8, telling them to be careful to remember Him after they had eaten and were satisfied, otherwise they might become proud and start to say that their own effort had brought them riches. And of course, God was right. The Israelites got to the promised land and had everything they could ever want and totally forgot about God and started to believe in themselves and in idols. And I have done the same. But I am nothing but a tiny speck in the scheme of things. The fact that I have a husband, a healthy child, a job, a car, a family, friends, a church family, a roof over my head, more than enough food to eat and clothes to wear is not proof that I have done something right, but rather that God has been extremely merciful and patient with me. And even if I didn't have any of these things, God would still be faithful and merciful.
So, I am thankful for Lucy, though I am pretty certain that she won't be with us for long. But she has reminded me to humble myself before God and remember that I am nothing and deserve nothing.
Here are a couple of verses for today:
Isaiah 40:31
"but they who wait for the Lord shall renew their strength;
they shall mount up with wings like eagles;
they shall run and not be weary;
they shall run and not be faint."
Job 1: 20-21
"Then Job arose and tore his robe and shaved his head and fell on the ground and worshiped9
. And he said, 'Naked I came from my mother's womb, and naked shall I return. The Lord gave, and the Lord has taken away. Blessed be the name of the Lord.'"
Friday, March 16, 2012
More things coming together!
Since I last posted, I have officially scheduled my new cardiologist appointment and an appointment with the geneticist for next Tuesday. I will also see the perinatologist on Tuesday if he has time that morning to see me, since he has offices at Medical City and here in Arlington. I also spoke with a nice lady named Leonore (I think!) right when we woke up this morning about how she was planning my visit to the new OB, my tour of the NICU, my meeting with the surgeons, and my meeting with the neonatologists who will be working in the NICU. This will probably all take place Monday of the week after next. Hallelujah! I feel like things are really getting organized, finally. They did tell me I will most likely be going to the OB once a week from now on, but they said they would try to work it out so that I could go see Dr. Trimmer one week and the Dallas OB the next and not have to drive to Dallas every week just yet. Please continue to pray for us! We appreciate all of your support and prayers immensely!
Thursday, March 15, 2012
Things are coming together!
We had a growth scan today and Lucy now weighs a WHOPPING 1 lb! I was praying for her to weigh at least a pound, so my prayer was answered. She is 10 inches long. She is measuring overall about 4 weeks behind now, so a little more behind than before, but she is still growing. Also, her kidneys are definitely still functioning because I have a normal amount of amniotic fluid.
The perinatologist, Dr. Trimmer, was very helpful today, along with his nurse, Melanie, in helping me get a game plan in place. We have decided to deliver at Medical City. Everything is in the same building there and he told me that basically the team of surgeons we would be working with would be the same whether we went to Medical City or Children's, so, as much as I would love ;) delivering at Parkland, I'm glad to be going somewhere that is easy to get to and has better parking, and great doctors, from what I hear. I am working on coordinating things, but so far I believe I will be going to see the geneticist, the new fetal cardiologist, and possibly the OB all on the same day in the same hospital!
That's about all I have for today!
The perinatologist, Dr. Trimmer, was very helpful today, along with his nurse, Melanie, in helping me get a game plan in place. We have decided to deliver at Medical City. Everything is in the same building there and he told me that basically the team of surgeons we would be working with would be the same whether we went to Medical City or Children's, so, as much as I would love ;) delivering at Parkland, I'm glad to be going somewhere that is easy to get to and has better parking, and great doctors, from what I hear. I am working on coordinating things, but so far I believe I will be going to see the geneticist, the new fetal cardiologist, and possibly the OB all on the same day in the same hospital!
That's about all I have for today!
Friday, March 9, 2012
Loud noises, lots of waiting, and jamon serrano
I was feeling so hopeful this morning. School went by so fast, I had to stop and get gas, and I was on the road. I found the MRI place easily enough, but the parking was so confusing, I just decided to call. I'm glad I did! The receptionist told me just where to go and I used Valet. She said the only other option was to park a few BLOCKS away and wait for a shuttle. So, the $5 were more than worth it on this cold day! The hospital was an absolute maze, but all the people I encountered were so friendly. Still, I'm kind of hoping we won't be delivering over there, unless of course it's the best for Lucy.
After waiting a while (I was 40 minutes early, after all), they brought me a key and asked me to change into a hospital gown. They took me back for the MRI and I was amazed at the size of the machine! Also, it makes a funny old squeaky washing machine noise that I didn't expect even when they're not actually taking images. I laid down on the bed (more of a table padding-wise) and they put a big cushion under my legs. So far so good! They gave me some ear plugs for the "loud noises" and then they lifted the table to a few inches away from the top of the tube and sent me in. I am not claustrophobic, but I will admit that the first 30 seconds or so in the machine, I think I almost had a panic attack. Not that I've ever had one, but it was pretty terrifying just for a moment and then I calmed myself down and reminded myself that I am a BIG GIRL! The noises that everyone had warned me about were not that bad at all. The worst part of all was having to hold my breath for quite a while several times in a row. After doing it three times in a row with about a 10 second rest in between, I had a pretty strong Braxton Hicks contraction and the baby was jumping. It was pretty intense, but it went away, so we made it through the 45 minutes or so in the tube. They sent me to get dressed and I sat in the waiting room again. About a minute after I sat down, they called me back for more images. Haha. So much for being quick at getting dressed! So, I went back in for about 15 more minutes. They tried to give me earplugs again and I turned then down. I told them I was a kindergarten teacher and the mother of a 15 month old. Loud noises for me fall into one of two categories: Loud noises that require my immediate attention and loud noises that do not require my attention. Most of the loud noises in my life fall into the first category, so the MRI machine noises were almost like music to my ears!
After the second time in, I changed back into my clothes and they sent me to another waiting area. I spoke to a very nice doctor, Dr. Twickler, about what she was seeing. She believes that the hernia is not left sided, but right sided and larger than we expected. She is seeing not only the stomach, but also about half of the liver, and a small part of the intestine up in the chest cavity. Unfortunately, this is all worse than originally expected.
After that I rushed over to Medical City to Dr. Kao's office. I was half an hour late since the MRI took so long, but it was fine with them. They took me back and I had a sonogram. The tech is really nice and told me about his twin girls and their teacher at school. It was nice to talk to a grownup about normal things for a while. (On a note unrelated to the baby, he told me that the parents at his daughters' school have to get in a lottery system to be able to volunteer because of the sheer quantity of parents that they have who want to volunteer!! That's great!) So, after the sonogram, Dr. Kao told me that the tetralogy of fallot is still there and that the biggest problem is that the pulmonary arteries (artery?) are very narrow and will most likely require a shunt soon after birth. Unfortunately, she doesn't really know what that will look like with the hernia situation. Also, she doesn't know much about Mosaic Trisomy 16 and wants me to talk to a geneticist, which is fine, but I doubt they will tell me anything I haven't already found out from other MT16 parents and from www.trisomy16.org. She said that with the two issues, and the fact that she is growth restricted and will likely be born pre-term, the probability of mortality is very high.
So, where do we go from here? We can't go anywhere but forward. Hopefully by the end of this next week, we will have made plans for where I will be delivering, at least. I would like to say that I'm still very hopeful, but really I'm starting to wonder if I'm sugar-coating things. Either way, I know it will be alright in the end, but I feel like I just don't have the strength to plan for more than a birth and probably a death. I bought one pretty blanket for her, just in case, and I am going to buy a pretty little gown that I'm hoping she will wear alive. I don't want to be pessimistic, but I also don't want to head too far in a direction that God hasn't opened up yet. Please keep praying for us! Maybe Lucy will be the one baby who defies all the odds! There always has to be a first baby to survive something, right?
My Bible-in-a-year plan is currently on Joshua, so I was listening to the beginning of it in the car. I can hardly stand the radio anymore. It's hard to listen to people singing about frivolous everyday things when you have life and death matters on your mind. So, I've been taking advantage of my Blu tooth connection and listening to the Bible in the car. Joshua and Caleb were the only Israelites that God allowed into the promised land from their generation because they saw a situation that to any human eye looked hopeless and said that God would do the work and give them the land. Of course, they had the promise ahead of time that God was going to give them the land. I don't have a promise from God that Lucy will live, but I do have the promise that God works for good in all things for those who love Him and are called according to His purpose. So, I suppose that's my dilemma. Should I hope for survival and plan for it or should I just hope in general and not prepare anything? I guess I'm just struggling with being still and waiting. Yes, that's what it is. I'm having a really hard time being still. I want to plan, to buy, to organize, to move on, and really there's nothing I can do. The doctors want to plan, and do, and talk, and test, too, but I was really thinking today about just stopping all of the appointments. I know I can't do that at this point, because if I did I would most likely forfeit any chance of Lucy having a concrete intervention plan at birth, but it is very tempting.
Well, I guess that's enough rambling for tonight. I really appreciated a comment from Liz on my last post. (I appreciate all of your comments!) She told me about a baby who had a 1% chance of survival and is alive today! So, now we just need to wait and be still and let God say what will happen next. Please keep praying for us!
P.S. - I just remembered that I referred to jamon serrano in the title. Since it was right at 5 when I got out, I stopped at Central Market and wandered around. A good friend had invited me for dinner at her house, but I knew that if I was with friends, I would be crying and embarrassing myself, so I opted for the anonymity of the grocery store. I left with a few good things: Love Dip (very good, but very garlicky!I think they must call it that because whoever you're around after you eat it better love you.), sweet potato chips, a chirimoya (Emilio's mom has these in her back yard in Peru, but we had never seen them here!), and some jamon serrano for my husband. It's a good thing I don't live close to a Central Market anymore because I think we would spend too much money there!
Here's the verse I was referring to earlier:
"And we know that in all things God works for the good of those who love him, who have been called according to his purpose." Romans 8:28
After waiting a while (I was 40 minutes early, after all), they brought me a key and asked me to change into a hospital gown. They took me back for the MRI and I was amazed at the size of the machine! Also, it makes a funny old squeaky washing machine noise that I didn't expect even when they're not actually taking images. I laid down on the bed (more of a table padding-wise) and they put a big cushion under my legs. So far so good! They gave me some ear plugs for the "loud noises" and then they lifted the table to a few inches away from the top of the tube and sent me in. I am not claustrophobic, but I will admit that the first 30 seconds or so in the machine, I think I almost had a panic attack. Not that I've ever had one, but it was pretty terrifying just for a moment and then I calmed myself down and reminded myself that I am a BIG GIRL! The noises that everyone had warned me about were not that bad at all. The worst part of all was having to hold my breath for quite a while several times in a row. After doing it three times in a row with about a 10 second rest in between, I had a pretty strong Braxton Hicks contraction and the baby was jumping. It was pretty intense, but it went away, so we made it through the 45 minutes or so in the tube. They sent me to get dressed and I sat in the waiting room again. About a minute after I sat down, they called me back for more images. Haha. So much for being quick at getting dressed! So, I went back in for about 15 more minutes. They tried to give me earplugs again and I turned then down. I told them I was a kindergarten teacher and the mother of a 15 month old. Loud noises for me fall into one of two categories: Loud noises that require my immediate attention and loud noises that do not require my attention. Most of the loud noises in my life fall into the first category, so the MRI machine noises were almost like music to my ears!
After the second time in, I changed back into my clothes and they sent me to another waiting area. I spoke to a very nice doctor, Dr. Twickler, about what she was seeing. She believes that the hernia is not left sided, but right sided and larger than we expected. She is seeing not only the stomach, but also about half of the liver, and a small part of the intestine up in the chest cavity. Unfortunately, this is all worse than originally expected.
After that I rushed over to Medical City to Dr. Kao's office. I was half an hour late since the MRI took so long, but it was fine with them. They took me back and I had a sonogram. The tech is really nice and told me about his twin girls and their teacher at school. It was nice to talk to a grownup about normal things for a while. (On a note unrelated to the baby, he told me that the parents at his daughters' school have to get in a lottery system to be able to volunteer because of the sheer quantity of parents that they have who want to volunteer!! That's great!) So, after the sonogram, Dr. Kao told me that the tetralogy of fallot is still there and that the biggest problem is that the pulmonary arteries (artery?) are very narrow and will most likely require a shunt soon after birth. Unfortunately, she doesn't really know what that will look like with the hernia situation. Also, she doesn't know much about Mosaic Trisomy 16 and wants me to talk to a geneticist, which is fine, but I doubt they will tell me anything I haven't already found out from other MT16 parents and from www.trisomy16.org. She said that with the two issues, and the fact that she is growth restricted and will likely be born pre-term, the probability of mortality is very high.
So, where do we go from here? We can't go anywhere but forward. Hopefully by the end of this next week, we will have made plans for where I will be delivering, at least. I would like to say that I'm still very hopeful, but really I'm starting to wonder if I'm sugar-coating things. Either way, I know it will be alright in the end, but I feel like I just don't have the strength to plan for more than a birth and probably a death. I bought one pretty blanket for her, just in case, and I am going to buy a pretty little gown that I'm hoping she will wear alive. I don't want to be pessimistic, but I also don't want to head too far in a direction that God hasn't opened up yet. Please keep praying for us! Maybe Lucy will be the one baby who defies all the odds! There always has to be a first baby to survive something, right?
My Bible-in-a-year plan is currently on Joshua, so I was listening to the beginning of it in the car. I can hardly stand the radio anymore. It's hard to listen to people singing about frivolous everyday things when you have life and death matters on your mind. So, I've been taking advantage of my Blu tooth connection and listening to the Bible in the car. Joshua and Caleb were the only Israelites that God allowed into the promised land from their generation because they saw a situation that to any human eye looked hopeless and said that God would do the work and give them the land. Of course, they had the promise ahead of time that God was going to give them the land. I don't have a promise from God that Lucy will live, but I do have the promise that God works for good in all things for those who love Him and are called according to His purpose. So, I suppose that's my dilemma. Should I hope for survival and plan for it or should I just hope in general and not prepare anything? I guess I'm just struggling with being still and waiting. Yes, that's what it is. I'm having a really hard time being still. I want to plan, to buy, to organize, to move on, and really there's nothing I can do. The doctors want to plan, and do, and talk, and test, too, but I was really thinking today about just stopping all of the appointments. I know I can't do that at this point, because if I did I would most likely forfeit any chance of Lucy having a concrete intervention plan at birth, but it is very tempting.
Well, I guess that's enough rambling for tonight. I really appreciated a comment from Liz on my last post. (I appreciate all of your comments!) She told me about a baby who had a 1% chance of survival and is alive today! So, now we just need to wait and be still and let God say what will happen next. Please keep praying for us!
P.S. - I just remembered that I referred to jamon serrano in the title. Since it was right at 5 when I got out, I stopped at Central Market and wandered around. A good friend had invited me for dinner at her house, but I knew that if I was with friends, I would be crying and embarrassing myself, so I opted for the anonymity of the grocery store. I left with a few good things: Love Dip (very good, but very garlicky!I think they must call it that because whoever you're around after you eat it better love you.), sweet potato chips, a chirimoya (Emilio's mom has these in her back yard in Peru, but we had never seen them here!), and some jamon serrano for my husband. It's a good thing I don't live close to a Central Market anymore because I think we would spend too much money there!
Here's the verse I was referring to earlier:
"And we know that in all things God works for the good of those who love him, who have been called according to his purpose." Romans 8:28
Thursday, March 8, 2012
MRI and Cardiologist Appointments Tomorrow
Tomorrow at 12:30 Lucy and I will be getting our first MRI. I've heard that MRIs are horrible if you're claustrophobic. Thankfully, I am not! I'm not expecting it to be too annoying other than laying still on my back for quite a while. At 3:00 I will meet with Dr. Kao, the pediatric cardiologist, to take another look at Lucy's heart.
Here are some things to pray for:
1. That the MRI would show us that Lucy has a good amount of lung tissue and no other new issues!
2. That her heart defect would be gone (the doctor said she was only 90% sure about what she was seeing!) or at least better that they previously thought.
3. That I wouldn't develop pre-eclampsia (Mosaic Trisomy 16 tends to have a 1 in 4 chance of causing pre-eclampsia in the mother).
4. That Lucy would continue to grow and stay in as long as possible to give her more of a chance when she does come out!
Thank you all so much for praying for us! Amanda, a sweet friend from our church, gave me a list of names of people from our congregation who will be praying for me from the time I enter my first appointment until the last one is done. (And she is due to deliver her baby girl this coming week!) I am so grateful to her and to all of the people who are devoting time in prayer for us. It is truly a blessing! Also, thank you so much to all of the strangers, turned new friends who have been so willing to share their lives and stories with us.
I was feeling pretty down last weekend about things and started to panic a bit. I was thinking about things though and decided that I've got to stay calm for several reasons: for my family, for my sanity, and because it is commanded of me by God! I started thinking about my son and how upset he gets when I take him to get shots. He gets REALLY mad when they give him the shot and looks at me like I'm so mean. He has no concept of the value of vaccination or preventative care. All he knows is that the person who is supposed to love and take care of him is allowing him extreme (but very temporary) pain. I allow him that pain because I know that it is worth it in the long run, and I don't try to explain to him the value of it yet, since I know he is not developmentally able to reason that far into the future. I think as humans we have to remember that God, our Father, is not stuck in time or space and is able to see what is best for us in the long run. Sometimes what is best involves periods of pain, sadness, loss, hardship, etc, but many times it is exactly these things that remind us to trust in Him and not in our own strength. That's what I'm hanging on to for now. I know I have yet to come to the difficult part of this journey, but I'm going to come back and read this and remind myself, because I know it's true.
Here's my verse for this post:
"So never worry about tomorrow, because tomorrow will worry about itself. Each day has enough trouble of its own." Matthew 6:34
Here are some things to pray for:
1. That the MRI would show us that Lucy has a good amount of lung tissue and no other new issues!
2. That her heart defect would be gone (the doctor said she was only 90% sure about what she was seeing!) or at least better that they previously thought.
3. That I wouldn't develop pre-eclampsia (Mosaic Trisomy 16 tends to have a 1 in 4 chance of causing pre-eclampsia in the mother).
4. That Lucy would continue to grow and stay in as long as possible to give her more of a chance when she does come out!
Thank you all so much for praying for us! Amanda, a sweet friend from our church, gave me a list of names of people from our congregation who will be praying for me from the time I enter my first appointment until the last one is done. (And she is due to deliver her baby girl this coming week!) I am so grateful to her and to all of the people who are devoting time in prayer for us. It is truly a blessing! Also, thank you so much to all of the strangers, turned new friends who have been so willing to share their lives and stories with us.
I was feeling pretty down last weekend about things and started to panic a bit. I was thinking about things though and decided that I've got to stay calm for several reasons: for my family, for my sanity, and because it is commanded of me by God! I started thinking about my son and how upset he gets when I take him to get shots. He gets REALLY mad when they give him the shot and looks at me like I'm so mean. He has no concept of the value of vaccination or preventative care. All he knows is that the person who is supposed to love and take care of him is allowing him extreme (but very temporary) pain. I allow him that pain because I know that it is worth it in the long run, and I don't try to explain to him the value of it yet, since I know he is not developmentally able to reason that far into the future. I think as humans we have to remember that God, our Father, is not stuck in time or space and is able to see what is best for us in the long run. Sometimes what is best involves periods of pain, sadness, loss, hardship, etc, but many times it is exactly these things that remind us to trust in Him and not in our own strength. That's what I'm hanging on to for now. I know I have yet to come to the difficult part of this journey, but I'm going to come back and read this and remind myself, because I know it's true.
Here's my verse for this post:
"So never worry about tomorrow, because tomorrow will worry about itself. Each day has enough trouble of its own." Matthew 6:34
Friday, March 2, 2012
Questions and hiccups!
This past week Lucy has started to either get the hiccups or do kickboxing. It is so amazing to feel her moving around in there! I will be 24 weeks along tomorrow, which is generally accepted as the youngest a baby can usually be born and survive. Of course, Lucy is the size of a 21 weeker still, so I'm going to feel much better at about 27 weeks. I've finally started to think of some questions for the doctors and I've been working furiously at school to get lesson plans, flipcharts, and copies made just in case I do leave before the end of the school year. My plan is to be ready by 30 weeks so if she comes a little earlier than that, I'll be almost ready, and if she comes at 35-36 weeks like they predict (please stay in and grow, baby girl!) then I will have 5-6 less stressful weeks before she gets here to focus on spending time with Isaac and mentally and emotionally preparing for whatever happens.
Have you ever been in a ticker tape parade? Or had a stack of papers get away from you on a windy day? That's a little like what I'm feeling. I feel like I'm trying to pick up and organize all these details, responsibilities, and ideas that were blown out of order with a simple sonogram. I feel that I've just now re-gathered everything and now I must put it back in order and re-prioritize as quickly as possible. This is probably not the best metaphor, but I couldn't think of a better way to put it. Maybe it all reminds me a little bit of ants. Have you ever kicked over an anthill? The ants all go crazy at first, but if you come back a few hours later or sometimes a few days later, they ants have generally begun to rebuild the hill. I think they have the right attitude. Despite something that could only be classified as a major catastrophe for a community of ants, they don't ever seem to just give up and go on antidepressants or sit around and complain about their circumstances. I pray that I will have that same stamina and focus through all of this, and bring God glory for the strength that only He can provide.
So now that things are settling, I have some questions for you families who have gone through the CDH surgery:
1. When did you give birth and how much did your baby weigh?
2. How many days were you in the NICU?
3. How many days past birth was the operation?
4. How many days was your little one on ECMO (if he/she was)?
5. What was your LHR?
6. If you are out of the hospital, how long did you have to be super careful about germs and visitors?
7. Were you able to feed your baby breastmilk?
8. Did you go into labor on your own, have pre-eclampsia, or were you recommended to induce/have a c-section for medical reasons?
9. What are things you wish you would have taken with you to the hospital and/or couldn't live without?
Ok, I think that's it for now. Thank you! Also, feel free to just email me at rebecca.lerzundi@gmail.com.
So now, we wait for the 9th and the MRI and the heart doctor. Please pray that we will get good news and pray that I can be as prepared as possible! Also, please pray that the placenta doesn't stop working anytime soon and that Lucy would grow as much as possible before she comes. She still weighs a little less than a pound.
Thank you all for your prayers and support!
Have you ever been in a ticker tape parade? Or had a stack of papers get away from you on a windy day? That's a little like what I'm feeling. I feel like I'm trying to pick up and organize all these details, responsibilities, and ideas that were blown out of order with a simple sonogram. I feel that I've just now re-gathered everything and now I must put it back in order and re-prioritize as quickly as possible. This is probably not the best metaphor, but I couldn't think of a better way to put it. Maybe it all reminds me a little bit of ants. Have you ever kicked over an anthill? The ants all go crazy at first, but if you come back a few hours later or sometimes a few days later, they ants have generally begun to rebuild the hill. I think they have the right attitude. Despite something that could only be classified as a major catastrophe for a community of ants, they don't ever seem to just give up and go on antidepressants or sit around and complain about their circumstances. I pray that I will have that same stamina and focus through all of this, and bring God glory for the strength that only He can provide.
So now that things are settling, I have some questions for you families who have gone through the CDH surgery:
1. When did you give birth and how much did your baby weigh?
2. How many days were you in the NICU?
3. How many days past birth was the operation?
4. How many days was your little one on ECMO (if he/she was)?
5. What was your LHR?
6. If you are out of the hospital, how long did you have to be super careful about germs and visitors?
7. Were you able to feed your baby breastmilk?
8. Did you go into labor on your own, have pre-eclampsia, or were you recommended to induce/have a c-section for medical reasons?
9. What are things you wish you would have taken with you to the hospital and/or couldn't live without?
Ok, I think that's it for now. Thank you! Also, feel free to just email me at rebecca.lerzundi@gmail.com.
So now, we wait for the 9th and the MRI and the heart doctor. Please pray that we will get good news and pray that I can be as prepared as possible! Also, please pray that the placenta doesn't stop working anytime soon and that Lucy would grow as much as possible before she comes. She still weighs a little less than a pound.
Thank you all for your prayers and support!
Sunday, February 26, 2012
Walking with God
Today in Bible class, Terry, our preacher, talked about Abraham and Sarah and how we need to learn to walk with God, not run ahead of Him. I feel like this experience is going to be the perfect way to learn patience, because there really is nothing I can do to change things, at least not at this point. Of course I could have just terminated the pregnancy, which is what it seems must have happened to most other cases like Lucy's because there are NO cases that I, my doctor, or my friend Emily, who is a pediatrician, have been able to find so far here in the U.S. Even if they had told us Lucy did have a fatal disease, I couldn't have terminated the pregnancy. Someone on a baby board said that if they had a child outside the womb who was diagnosed with cancer, they wouldn't just put them to sleep, they would do everything they could to help them survive. So why should it be any different for a baby in the womb?
So, back to walking with God. Most of the big mistakes I have made have had to do with grabbing for things that I wanted when it wasn't the right time. I didn't trust God to give me what I needed when the time was right. Now, I have no choice but to wait and trust God. And the weird thing is, it's liberating knowing that I can't do anything to control the situation at this point.
I have seen God working in all of this already, which gives me more peace. Earlier this year I wondered why in the world I had 27 students this year (normally I have 18-22). The surface reason is because of state budget cuts, and unexpected growth in the district, but I knew that there must be some deeper reason for this over abundance of kindergarteners. Now I have my answer! There is a lady who is my compliance teacher, Mrs. Raby, and she is wonderful. She is patient and even-keeled, but strict, and the kids really like her and respect her. She is a hard worker and she very rarely misses work. Now that I have to take half days and whole days at times for doctor's appointments and will have to be gone for at least the last few weeks of school, I know that there will be someone reliable with my school children. And really, for 27 kids, they are one of the least difficult classes I have had since I started teaching. God knows what we need when we need it. Of course, we don't always get to see the proof of that right away, but I thank Him that He let me see how He was working since the school year started! It's such a blessing to serve a God who is not stuck in time and space like we are. Another thing I had started to think about was having to go to Houston/be in Houston for an extended period of time. Today, a friend from church, Laura, offered her parent's house to us if we needed to spend any time in Houston. I didn't even have to ask.
Terry also talked about Hagar, Sarah's maidservant who was impregnated by Abraham by Sarah's suggestion and then later mistreated by Sarah and ran off into the desert. The Angel of the Lord went out and found Hagar and comforted her and told her that she had to go back to Abraham and Sarah and that God would bless her. She didn't ask for God's help, but He knew she needed it.
Well, I think that's all for today. Keep us in your prayers. I will update when I get more news!
Oh, the idea to ask for specific prayer requests came from another CDH blog, but I've read so many I can't remember exactly which one it was. I thought that was a really good idea and as soon as I figure out who has it, I'll give them credit!
Here's a verse for today:
Fear not, for I am with you;
be not dismayed, for I am your God;
I will strengthen you, I will help you,
I will uphold you with my righteous right hand.
(Isaiah 41:10)
So, back to walking with God. Most of the big mistakes I have made have had to do with grabbing for things that I wanted when it wasn't the right time. I didn't trust God to give me what I needed when the time was right. Now, I have no choice but to wait and trust God. And the weird thing is, it's liberating knowing that I can't do anything to control the situation at this point.
I have seen God working in all of this already, which gives me more peace. Earlier this year I wondered why in the world I had 27 students this year (normally I have 18-22). The surface reason is because of state budget cuts, and unexpected growth in the district, but I knew that there must be some deeper reason for this over abundance of kindergarteners. Now I have my answer! There is a lady who is my compliance teacher, Mrs. Raby, and she is wonderful. She is patient and even-keeled, but strict, and the kids really like her and respect her. She is a hard worker and she very rarely misses work. Now that I have to take half days and whole days at times for doctor's appointments and will have to be gone for at least the last few weeks of school, I know that there will be someone reliable with my school children. And really, for 27 kids, they are one of the least difficult classes I have had since I started teaching. God knows what we need when we need it. Of course, we don't always get to see the proof of that right away, but I thank Him that He let me see how He was working since the school year started! It's such a blessing to serve a God who is not stuck in time and space like we are. Another thing I had started to think about was having to go to Houston/be in Houston for an extended period of time. Today, a friend from church, Laura, offered her parent's house to us if we needed to spend any time in Houston. I didn't even have to ask.
Terry also talked about Hagar, Sarah's maidservant who was impregnated by Abraham by Sarah's suggestion and then later mistreated by Sarah and ran off into the desert. The Angel of the Lord went out and found Hagar and comforted her and told her that she had to go back to Abraham and Sarah and that God would bless her. She didn't ask for God's help, but He knew she needed it.
Well, I think that's all for today. Keep us in your prayers. I will update when I get more news!
Oh, the idea to ask for specific prayer requests came from another CDH blog, but I've read so many I can't remember exactly which one it was. I thought that was a really good idea and as soon as I figure out who has it, I'll give them credit!
Here's a verse for today:
Fear not, for I am with you;
be not dismayed, for I am your God;
I will strengthen you, I will help you,
I will uphold you with my righteous right hand.
(Isaiah 41:10)
Saturday, February 25, 2012
Growth Scan
Yesterday was such a good day. I got to sleep in with my hubby and son Isaac, eat breakfast with my Isaac whose appetite finally came back after two weeks of not feeling so well, go and see Lucy via sonogram, and take my son to his 15 month checkup.
As soon as the doctor started the sonogram she said, "Wow, she's grown!", which of course is music to my ears. She now weighs a whopping 319 grams (an average baby at her gestational age should weigh about 500 grams) and her hernia is the same as before (only stomach up and heart is still not "squished"). We could see her bladder, which they couldn't find at the last sonogram, thinking that probably her kidneys weren't working. Also, I still have a normal amount of amniotic fluid, which to me means her kidneys must still be functioning. My doctor did mention that due to Lucy's two major defects and a chromosomal abnormality, it may be difficult to find a willing surgeon in the area. She said we may be looking at delivering in Houston, where we would have more luck finding someone willing to take a risk on a baby with a genetic disorder. My MRI got rescheduled for the 9th, which is also when I go back to see the pediatric cardiologist. She told me last time there was a 10% chance she was wrong about the tetralogy of fallot, so I'm praying they will be amazed and not see anything abnormal at this sonogram or that it won't be as severe as they thought.
Isaac's appointment went well, also. He has gained a pound and grown almost two inches since December. The doctor didn't sound concerned about him not walking on his own yet, since she had him walk just holding on to a finger and he seems pretty steady. She said he probably isn't walking yet since he waiting until after year and is able to realize the danger involved. Ironically, last night he walked almost across the room several times, much more than he's tried ever! It's like he was waiting for the doctor to tell him he should be walking. My silly boy!
So, here are some things to pray for, if you will:
1. Lucy's condition to stay stable.
2. For her growth to continue.
3. For me to be able to carry the pregnancy as close to term as possible to give her a chance to grow (with this Trisomy, I will most likely deliver at 35-36 weeks).
4. For the doctor's to not see anything (or at least for it not to be as severe as they thought) at the cardio sonogram on the 9th).
5. That they would see plenty of lung tissue at the MRI on the 9th.
Thank you so much for your prayers and support!
Here's a verse for today:
2 Peter 3:9
The Lord is not slow in keeping his promise, as some understand slowness. Instead he is patient with you, not wanting anyone to perish, but everyone to come to repentance.
As soon as the doctor started the sonogram she said, "Wow, she's grown!", which of course is music to my ears. She now weighs a whopping 319 grams (an average baby at her gestational age should weigh about 500 grams) and her hernia is the same as before (only stomach up and heart is still not "squished"). We could see her bladder, which they couldn't find at the last sonogram, thinking that probably her kidneys weren't working. Also, I still have a normal amount of amniotic fluid, which to me means her kidneys must still be functioning. My doctor did mention that due to Lucy's two major defects and a chromosomal abnormality, it may be difficult to find a willing surgeon in the area. She said we may be looking at delivering in Houston, where we would have more luck finding someone willing to take a risk on a baby with a genetic disorder. My MRI got rescheduled for the 9th, which is also when I go back to see the pediatric cardiologist. She told me last time there was a 10% chance she was wrong about the tetralogy of fallot, so I'm praying they will be amazed and not see anything abnormal at this sonogram or that it won't be as severe as they thought.
Isaac's appointment went well, also. He has gained a pound and grown almost two inches since December. The doctor didn't sound concerned about him not walking on his own yet, since she had him walk just holding on to a finger and he seems pretty steady. She said he probably isn't walking yet since he waiting until after year and is able to realize the danger involved. Ironically, last night he walked almost across the room several times, much more than he's tried ever! It's like he was waiting for the doctor to tell him he should be walking. My silly boy!
So, here are some things to pray for, if you will:
1. Lucy's condition to stay stable.
2. For her growth to continue.
3. For me to be able to carry the pregnancy as close to term as possible to give her a chance to grow (with this Trisomy, I will most likely deliver at 35-36 weeks).
4. For the doctor's to not see anything (or at least for it not to be as severe as they thought) at the cardio sonogram on the 9th).
5. That they would see plenty of lung tissue at the MRI on the 9th.
Thank you so much for your prayers and support!
Here's a verse for today:
2 Peter 3:9
The Lord is not slow in keeping his promise, as some understand slowness. Instead he is patient with you, not wanting anyone to perish, but everyone to come to repentance.
Wednesday, February 15, 2012
Updates - Good and Bad News and Some Hope!
I should have been updating more often, but I just haven't had the time.
On February 6th, my husband and I went back to Dr. Rodriguez, the perinatologist and she did another ultrasound. Dr. Trimmer, her associate also took a look at everything. He said he didn't see anything new other than perhaps a tad of scoliosis (which at this point is like telling me she has a paper cut!) and that he was pretty convinced the kidneys were not working. There seems to be limited blood flow around the kidneys and he couldn't find the bladder. Thankfully, at the last two or three ultrasounds I know for sure they were seeing the bladder, so I'm hoping that little Lucy had just recently emptied hers and that's why he couldn't see it. He looked at the heart for a while and told us it looked fine, just displaced. Also, the stomach is still the only organ they can see in the chest cavity. We were able to see diaphragm on the right side for sure! So, at least we know there is tissue there for them to work with.
On February 9th, I went to Dallas. to see Dr. Kao, the pediatric cardiologist. Her tech looked at the heart for a long time and then I met with Dr. Kao. After getting such a positive outlook from Dr. Trimmer, I was really hoping for the best, but she said Lucy has Tetralogy of Fallot, which involved four different problems with the heart, the main being a hole between two of the chambers which allows non-oxygenated blood to mix with oxygenated blood. She said that sometime soon after birth she could require a shunt to send more oxygenated blood to the lungs, or she might be ok without it, but that a full repair would be done at 6 months. Wow, another major issue.
The next morning I had a call from Dr. Rodriguez asking me to come in the same day at 1:00. I left school early and headed over. Since it was such short notice I had to go alone, but sometimes it seems easier to get bad news that way. I definitely cry less when people aren't being overly nice to me, so I figured it would be fine to go. I could have waited until Monday, but facing a weekend of wondering what the amnio results were was unthinkable. So, I headed in. Dr. Rodriguez told me we definitely had a little girl!!! Then she said she had to get out textbooks and go online and research because she couldn't remember all of what was involved with my baby girl's diagnosis. She has Mosaic Trisomy 16, which is extremely rare. Full Trisomy 16 is the number 1 cause of 1st trimester miscarriages and is very incompatible with life. The Mosaic form, on the other hand, can produce children with little or no major problems. Lucy, unfortunately, has most of the major problems that can come with this Mosaic. Dr. Rodriguez said it was like Lucy read the chapter because she has all of the symptoms: IUGR, thick placenta, CDH, tetralogy of fallot, and kidney abnormalities. She may also have an imperforate anus, which we won't find out about until birth (please pray that she doesn't!). She doesn't seem to have club feet at this point, which is another symptom.
So, in short, Lucy has several major issues that we are going to face at birth. Also, we will most likely be delivery mid- to late May instead of June 23rd because of the abnormal placenta. I also have a 1 in 4 chance of developing pre-eclampsia. Despite all of this, I really couldn't have been happier to have heard her diagnosis of Mosaic Trisomy 16. It means there is still hope for our little Lucy. If they had told us Trisomy 18 or 13, we would have known that we could for sure expect her death sometime soon before or after birth, but with this diagnosis, we will just have to wait and see, keep praying and keep hoping!
I will start to go in to get growth scans every two weeks, which I wish there wasn't a reason for, but since I have to do it, I must say it will be nice to see my little one so often. Please keep us in your prayers!
Here's my verse for this post:
Romans 5:3-5
"Not only so, but we also glory in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not put us to shame, because God's love has been poured out into our hearts through the Holy Spirit, who has been given to us."
On February 6th, my husband and I went back to Dr. Rodriguez, the perinatologist and she did another ultrasound. Dr. Trimmer, her associate also took a look at everything. He said he didn't see anything new other than perhaps a tad of scoliosis (which at this point is like telling me she has a paper cut!) and that he was pretty convinced the kidneys were not working. There seems to be limited blood flow around the kidneys and he couldn't find the bladder. Thankfully, at the last two or three ultrasounds I know for sure they were seeing the bladder, so I'm hoping that little Lucy had just recently emptied hers and that's why he couldn't see it. He looked at the heart for a while and told us it looked fine, just displaced. Also, the stomach is still the only organ they can see in the chest cavity. We were able to see diaphragm on the right side for sure! So, at least we know there is tissue there for them to work with.
On February 9th, I went to Dallas. to see Dr. Kao, the pediatric cardiologist. Her tech looked at the heart for a long time and then I met with Dr. Kao. After getting such a positive outlook from Dr. Trimmer, I was really hoping for the best, but she said Lucy has Tetralogy of Fallot, which involved four different problems with the heart, the main being a hole between two of the chambers which allows non-oxygenated blood to mix with oxygenated blood. She said that sometime soon after birth she could require a shunt to send more oxygenated blood to the lungs, or she might be ok without it, but that a full repair would be done at 6 months. Wow, another major issue.
The next morning I had a call from Dr. Rodriguez asking me to come in the same day at 1:00. I left school early and headed over. Since it was such short notice I had to go alone, but sometimes it seems easier to get bad news that way. I definitely cry less when people aren't being overly nice to me, so I figured it would be fine to go. I could have waited until Monday, but facing a weekend of wondering what the amnio results were was unthinkable. So, I headed in. Dr. Rodriguez told me we definitely had a little girl!!! Then she said she had to get out textbooks and go online and research because she couldn't remember all of what was involved with my baby girl's diagnosis. She has Mosaic Trisomy 16, which is extremely rare. Full Trisomy 16 is the number 1 cause of 1st trimester miscarriages and is very incompatible with life. The Mosaic form, on the other hand, can produce children with little or no major problems. Lucy, unfortunately, has most of the major problems that can come with this Mosaic. Dr. Rodriguez said it was like Lucy read the chapter because she has all of the symptoms: IUGR, thick placenta, CDH, tetralogy of fallot, and kidney abnormalities. She may also have an imperforate anus, which we won't find out about until birth (please pray that she doesn't!). She doesn't seem to have club feet at this point, which is another symptom.
So, in short, Lucy has several major issues that we are going to face at birth. Also, we will most likely be delivery mid- to late May instead of June 23rd because of the abnormal placenta. I also have a 1 in 4 chance of developing pre-eclampsia. Despite all of this, I really couldn't have been happier to have heard her diagnosis of Mosaic Trisomy 16. It means there is still hope for our little Lucy. If they had told us Trisomy 18 or 13, we would have known that we could for sure expect her death sometime soon before or after birth, but with this diagnosis, we will just have to wait and see, keep praying and keep hoping!
I will start to go in to get growth scans every two weeks, which I wish there wasn't a reason for, but since I have to do it, I must say it will be nice to see my little one so often. Please keep us in your prayers!
Here's my verse for this post:
Romans 5:3-5
"Not only so, but we also glory in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not put us to shame, because God's love has been poured out into our hearts through the Holy Spirit, who has been given to us."
Friday, February 3, 2012
First diagnosis
The first time I went in to the doctor, I should have been around 8 weeks along. The baby measured 6 weeks, but they said it was probably just because I was off on my dates. Two weeks seemed a little unreasonable to me, but I decided it was probably nothing. Over Christmas break, we had a sono done in Peru when I was 14 weeks. The baby was measuring a little less than 13 weeks. Once again, it seemed strange to me that the baby was measuring so small. Everything else seemed to be in place, so I stopped thinking about it. She also told us she was 99% sure it was a boy.
This past Thursday we had our 20 week anatomy scan. The baby was measuring 2 weeks behind and the ultrasound tech said the bowels were bright, which wasn't normal, and she couldn't get a good look at the heart, and I had placenta previa, so they would probably also send me to a specialist. My doctor also mentioned that there seemed to possibly be a clot in the placenta, but nothing else. We prayed and talked about this and hoped for the best. Yesterday I had my level 2 sono with the specialist, Dr. Rodriguez. She was very kind, and very quiet for much of the ultrasound. She asked if I would prefer for her to tell me what she was seeing or just wait till the end. I asked her to go ahead and explain and she said that the baby seemed to have a congenital diaphragmatic hernia, basically a hole in the diaphragm which allows the organs from the abdomen to move up into the chest cavity. She could only see the stomach in the chest cavity for sure, but said the bowels would probably move up at some point, further compressing the heart and lungs. She said that some children live until birth and have successful surgeries and survive with somewhat normal lives, but that it was a really tough diagnosis. Also, the baby has one dialated kidney, echogenic bowels (bright bowels, sometimes an indicator of Downs Syndrome), and of course the baby is really tiny, measuring at least two weeks behind. I agreed to have an amnio done, which was somewhat terrifying and painful, though I'm not sure if it was really that physically painful or it just seemed to be since I was thinking about what she was doing. My sweet cousin, Sarah, took the afternoon off from watching kids to come with me since my husband had to work, and she was very kind and supportive of me.
I should know something about the amnio results by Monday and I have another sonogram on Monday to look for other defects. Thursday we go to see a pediatric cardiologist to make sure that heart is ok.
So far, it all feels quite unreal, especially since just today little missy (they said it was probably a girl yesterday, but she still had her legs clamped shut) decided today would be the day to turn flips in my belly. Last night I had a nightmare that there were all kinds of tiny babies growing in my belly, all with some sort of problem. I woke up relieved and then I remembered that I didn't have lots of babies, but there was one little sweetheart in there who has a very uncertain future at this point.
I realized that I have very rarely in my life experienced suffering that was not the result of the consequences of my bad behavior. For that I can truly say that I have been blessed. I also cannot feel sad when I look at my husband who loves and takes care of me and Isaac, and when I look at my little boy, so happy and opinionated and full of life. What a blessing that he was born with no problems and has been so healthy. It's easy to take that for granted. Emilio reminded me last night that this baby is not really our baby, but God's baby, and if He wants her to stay with us, she will, and if He wants her with Him, He will take her when the time is right. I pray that God will be with us through this experience and strengthen our faith. We know that He is in control and that He doesn't make mistakes so we are ready to face this challenge head on.
I keep thinking about these two verses:
Job 1:20-21
20 At this, Job got up and tore his robe and shaved his head. Then he fell to the ground in worship 21 and said:
“Naked I came from my mother’s womb,
and naked I will depart.[c]
The LORD gave and the LORD has taken away;
may the name of the LORD be praised.”
and Psalm 139: 13-16
" For you did form my inward parts. You did knit me together in my mother's womb. I praise you for because I am fearfully and wonderfully made. Your works are wonderful, I know that full well. My frame was not hidden from you when I was made in the secret place When I was woven together in the depths of the earth, your eyes saw my unformed body. All the days ordained for me were written in your book before one of them came to be."
This past Thursday we had our 20 week anatomy scan. The baby was measuring 2 weeks behind and the ultrasound tech said the bowels were bright, which wasn't normal, and she couldn't get a good look at the heart, and I had placenta previa, so they would probably also send me to a specialist. My doctor also mentioned that there seemed to possibly be a clot in the placenta, but nothing else. We prayed and talked about this and hoped for the best. Yesterday I had my level 2 sono with the specialist, Dr. Rodriguez. She was very kind, and very quiet for much of the ultrasound. She asked if I would prefer for her to tell me what she was seeing or just wait till the end. I asked her to go ahead and explain and she said that the baby seemed to have a congenital diaphragmatic hernia, basically a hole in the diaphragm which allows the organs from the abdomen to move up into the chest cavity. She could only see the stomach in the chest cavity for sure, but said the bowels would probably move up at some point, further compressing the heart and lungs. She said that some children live until birth and have successful surgeries and survive with somewhat normal lives, but that it was a really tough diagnosis. Also, the baby has one dialated kidney, echogenic bowels (bright bowels, sometimes an indicator of Downs Syndrome), and of course the baby is really tiny, measuring at least two weeks behind. I agreed to have an amnio done, which was somewhat terrifying and painful, though I'm not sure if it was really that physically painful or it just seemed to be since I was thinking about what she was doing. My sweet cousin, Sarah, took the afternoon off from watching kids to come with me since my husband had to work, and she was very kind and supportive of me.
I should know something about the amnio results by Monday and I have another sonogram on Monday to look for other defects. Thursday we go to see a pediatric cardiologist to make sure that heart is ok.
So far, it all feels quite unreal, especially since just today little missy (they said it was probably a girl yesterday, but she still had her legs clamped shut) decided today would be the day to turn flips in my belly. Last night I had a nightmare that there were all kinds of tiny babies growing in my belly, all with some sort of problem. I woke up relieved and then I remembered that I didn't have lots of babies, but there was one little sweetheart in there who has a very uncertain future at this point.
I realized that I have very rarely in my life experienced suffering that was not the result of the consequences of my bad behavior. For that I can truly say that I have been blessed. I also cannot feel sad when I look at my husband who loves and takes care of me and Isaac, and when I look at my little boy, so happy and opinionated and full of life. What a blessing that he was born with no problems and has been so healthy. It's easy to take that for granted. Emilio reminded me last night that this baby is not really our baby, but God's baby, and if He wants her to stay with us, she will, and if He wants her with Him, He will take her when the time is right. I pray that God will be with us through this experience and strengthen our faith. We know that He is in control and that He doesn't make mistakes so we are ready to face this challenge head on.
I keep thinking about these two verses:
Job 1:20-21
20 At this, Job got up and tore his robe and shaved his head. Then he fell to the ground in worship 21 and said:
“Naked I came from my mother’s womb,
and naked I will depart.[c]
The LORD gave and the LORD has taken away;
may the name of the LORD be praised.”
and Psalm 139: 13-16
" For you did form my inward parts. You did knit me together in my mother's womb. I praise you for because I am fearfully and wonderfully made. Your works are wonderful, I know that full well. My frame was not hidden from you when I was made in the secret place When I was woven together in the depths of the earth, your eyes saw my unformed body. All the days ordained for me were written in your book before one of them came to be."
Subscribe to:
Posts (Atom)